Experiences of Family Members of Dying Patients Receiving Palliative Sedation

Purpose:

The suffering of a dying patient sometimes includes “refractory symptoms”. These symptoms are defined as severe symptoms, both physical and psychological, that cannot be treated for long periods, or their treatment leads to uncontrollable side effects^{1, 2}.  Palliative care is meant to improve the quality of life of all patients and their families, including dying patients, and to relieve their suffering ³.The recommended treatment for a dying patient suffering from “refractory symptoms” is palliative sedation ⁴.

Family members remain with the patient in his last days, are involved and are influenced by medical treatment ⁵ and should understand the aim of medical care ^{3, 5}. The suffering of the dying patient may cause distress to these family members^{3, 5, 6}.  According to the principles of Family Centered Care, treatment for the dying patient and family members should take into consideration the physical and psycho-social state ^{3, 7} and provide emotional and physical support, medical advice and education both for the patient and relatives ^3,6,7,8.

It has been reported that the dying patient’s family are often distressed and feel fear, helplessness, and exhaustion before the initiation of the sedation treatment ^{1, 5.}  These experiences can be the trigger to start palliative sedation in order to improve the patient's quality of life and to relieve the stress on family members who were watching the suffering of their loved one ⁹ .  On the other hand, it is postulated that family members may feel guilt and anxiety over making the decision to initiate palliative sedation, often thought to hasten death ^{6, 8}.

There have been few studies that have investigated the experiences of family members of terminal patients receiving palliative sedation and none were found that investigated these experiences over time. The purpose of this study was to describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.

Methods:

                 Design: Descriptive, comparative longitudinal study

                Sample:  A convenience sample of 34 family members of dying patients receiving palliative sedation therapy on an Oncology ward in Israel were included in this study. 

     Data collection: After receiving approval from the Institutional Ethics Review Board, family members were requested to complete the study questionnaire and to agree to complete the same questionnaire again by telephone one to four months after the death of their loved one.  Thirty eight family members were asked to participate in the study and 34 (89.5%) agreed.  Of the 34 who agreed to fill out the first questionnaire (T1), 8 refused to answer the second data collection (T2) after the death of the patient (76.5% of the sample).

     Instruments: The study questionnaire was based on that of Morita et al. ¹⁰. The purpose of the original questionnaire was to describe the experiences of family members of patients receiving palliative sedation in Japan.  The questionnaire consisted of four sections: a. demographic and background data of the family member study participant,  b.demographic and background data related to the patient receiving the palliative sedation c. the participant's experience concerning the palliative sedation, d. experiences related to regret and satisfaction with the use of palliative sedation.   Content validity of the questionnaire was checked by two experts in palliative care.  Small changes were made to increase the questionnaire's sensitivity.  Reliability was checked using Cronbach’s Alpha with results for T1 =.87 and for T2 =.84.  The test retest reliability for the fourth part of the questionnaire between T1 and T2 was found to be r=.70

     Analysis:  Descriptive statistics were used to describe the sample and results of the questionnaire.  Differences between T1 and T2 were determined using the McNemar test for a dichotomous variable, the Marginal Homogeneity test for a nominal variable, the Wilcoxon Signed Ranks test for an ordinal variable and the Paired Samples T-test for continuous variables.

Results:

The average age of family member participants was 50.9 years (range 19-77; SD=15.4). Most participants were children or spouses of the patient.  The average patient age was 62.27 years (range 21-89; SD=15.54), and almost all were Oncology patients excluding one with Leukemia. Most of patients were suffering from agitation, pain and dyspnea.

Most relatives felt that their loved ones were in distress or great distress before starting palliative sedation (T1:91%; n=31, T2: 92%; n=24).  The vast majority of participants were either satisfied or very satisfied with the medical care and with the use of sedation medication. At T1 the vast majority reported that the beginning of the sedation was properly timed (77%; n=26,) but at T2 this fell to 62% (n=16).

Explanations about palliative sedation usually included the purpose of the sedation (T1: 88%, n=30; T2: 92%, n=24).  However, occasionally this explanation did not adequately address the impact of the treatment on the patient's ability to communicate (T1: 29%, n=10; 23%, n=6), the patient's prognosis (T1: 38%, n=13; T2: 15%, n=4), nor its physical effect on the patient (T1: 38%, n=13, T2: 15%, n=4).In more than two thirds of the cases, the family perceived that the patient did not receive an explanation of the treatment (T1: 67.6% n=23; T2: 65.4% n=17).  Most family members were not informed of this treatment option before the patient's status deteriorated and received an explanation of palliative sedation only on the same day that the decision to initiate treatment was made (T1: n=25, 73.5%; T2: n=19, 73.1%). 

Almost all of the participants (T1:100%; T2: 88%) felt that palliative sedation was an ethical way to decrease suffering and the vast majority felt that it was very important that the patient did not suffer any longer (T1: 88% n=30, T2: 92% n=24). Almost one third thought that the treatment shortened the patient's life (T1: 32% n=11; T2: 27% n=7) and a smaller proportion feared that it killed the patient (T1: 15% n=5; T2: 19% n=5).  No significant differences were found between T1 and T2. 

Conclusion:

The primary purpose of palliative sedation is to relieve the suffering of the dying patient.  This was achieved according to the participants of this study.  Family members were involved in making the decision to initiate palliative sedation but were often burdened by the consequences of their choice.

Communication was not as effective as it could have been.  Family members reported that patients often did not receive an adequate explanation, particularly regarding the consequences of sedation.  Further evidence of poor communication was not being prepared for the sudden change in the patient's condition and decreased ability to communicate. This is partially explained by the large percentage of participants who first discussed the use of palliative sedation on the same day it was initiated and that many had not heard of the use of palliative sedation at all before that time.  It would seem that the explanation process might need more time. 

One of the more important ethical questions related to palliative sedation is whether the treatment may shorten the patient’s life.  Some participants agreed but fewer felt that the patient died because of sedation.  However, most felt that there were no other means to relieve such suffering and most family members reported that they did not have legal or ethical concerns about the use of sedation. Over time suspicions associated with the legal aspects of the therapy remained stable. Therefore, it would seem that the majority of participants in this study were not conflicted on an ethical level about their decision to administer palliative sedation.

Summary:  Most of the families were satisfied with the use of palliative sedation, the relief of suffering, and the support given by staff during the initiation of treatment and 1-4 months later. The results highlight the importance of communication between caregivers and family members, and the importance of providing timely and repeated explanations of palliative sedation. In addition, treatment should be started early enough to avoid unnecessary suffering of the patient and his family. Despite some fear of shortening the patient's life by use of sedation, all participants agreed that this is an ethical way to ease the suffering of the dying patient. More research, including qualitative and interventional studies, is needed to investigate this subject.